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Who am I ? I won't know myself soon!!!

annielou

Registered User
Sep 27, 2019
1,428
Yorkshire
Thanks @DianeW @Woo2 @Pete1 @Sarasa xxxx
I don't think it's a UTI as seems to have been getting worse for a while and building up to this. I will try get her to do sample and try home testing strips just in case but a few times in past when confusion ramped up a gear we've checked for UTI and it hasn't been. But just in case I'll try get sample if I can.
Yesterday in middle of asking about my dad and her mum dying and if I was her daughter etc she said I don't know why I don't these things how can I forget when my mum died am I mental. I said you're not mental mum and she said Well why don't I know then ? I said she had problems with her memory and that's what happens it misses big chunks out and mixes memories up. Mum said Sounds mental to me but I'm not going in a home cos they don't look after you and I don't know anybody. I didn't say anything to mum and she carried on asking if this or that was true but inside I was thinking You might not want a home mum but it's what you need. If I thought you could have company rather than isolation I would be suggesting it now.
I feel like it's not going to be long, waiting for covid to settle and restriction on isolation to lift isn't going as fast as mums need for overnight care. Although respite might not help as she won't be much better in home at moment. I can't bear her being so confused and upset, even carer couldn't distract or console her on Tuesday. I'm dreading her feeling so bad again today.
 

Woo2

Registered User
Apr 30, 2019
2,276
South East
I got the hospital bed pan things from link you gave me @annielou and just sat it on the toilet , told mum she had to have wee tested as it’s dr way of checking we are all ok while virus around , told her we had all done ours . She managed to pee in pot and not touch it so all good . Hope your day centre opens soon, ours have a raft of new procedures in place . Hope today is better , it’s heartbreaking isn’t it . 😞 🤗 🤞
 

Pete1

Registered User
Jul 16, 2019
798
Hi @annielou, it may not be UTI and just the state of play now. But I did find that the more extreme version of the confusion loops was a sign of a UTI - not the 'normal' confusion loops, if that makes sense!
I can't bear her being so confused and upset
I can totally empathize with that sentiment, it's just dreadful. All the things that your Mum is saying are familiar, it's the fact that you can't offer any solace or way of resolving the problems is the pill that is difficult to swallow.

Stay strong.
 

DianeW

Registered User
Sep 10, 2013
683
Lytham St Annes
I think if your Mum was admitted to a Care home for respite, the chances of her going back home are very very slim, I think they would confirm she needs 24hour care for her own safety, especially if you confirm you can not continue the level of care your providing, which you can’t for much longer without a crisis happening.

It is all that your doing that is keeping your Mum at home now....imagine if you didn’t go for a time.....what really would happen to your Mum then, think about it?

Of course she would be confused in care home, but she is confused in her own home now and doesn’t recognise it as home a lot of the time, nor what you are telling her either.

Her understanding is diminishing fast, I bet the carer has seen a decline with Mum?...it’s just awful for all of you.

Thinking of you, and hope you all have a reasonable day.
 

annielou

Registered User
Sep 27, 2019
1,428
Yorkshire
Thanks @Woo2 @Pete1 @DianeW @Starting on a journey xxxx
Glad the bed pan thing worked, wish I'd ordered some now. Mum didn't go to loo today only once and I was in kitchen and thought mum was in living room and only noticed when she flushed :rolleyes: She tends to go quite a while without going in morning and goes more mid afternoon onwards. I'm not there for rest of today but will try to catch her again tomorrow.
If I didn't go I think mum would get in a real state, tablets and eating would go to pot, she'd be more confused and more scared than ever and would be bored and lost on what to do too.
Someone has suggested to my sister that instead of phoning SS like before she could try filling in an online referral detailing risk to mums mental health and say she is becoming unsafe because of that. So she is going to try that later. Sis wondered that if SS suggest mum tries respite first to maybe use the full 4 weeks mum has been allowed in hope she may be able to come out of isolation for part of it and see what it's like in home and get chance to meet people and join in. Don't know if that would be an option or if it would work but may be an idea to try. We'll have to see what comes of online thing sis does. I asked her to let me know what she puts so I know if anyone gets in touch with mum while I'm there or contacts me direct I know whats been said and I'd could maybe have bit of input too. Sis says its online and she won;t know questions before hand and thinks has to answer so many then submit that to go to next page so can't tell before doing it so she said she'd try it tonight when I'm at home too. We'll see how it goes, what it asks and what happens from it.
Mum was bit better today, she hasn't been very questiony before I left today and has only asked if W (my dad) is dead a few times and seemed quite relaxed. She is normally a bit better on a morning but some days lately has been like it from start. She looks better today, she hadn't been in shower by look of dry floor and flannel on sink looked like she'd only had sink wash, but she must have noticed her hair was a mess and washed it in sink just before I arrived. She also had on different pair of trouser than last 3 days so that's a plus. Mum was sat on sofa in room drying her hair when I walked in. I say drying her hair, she had hairdryer pointed more at her back than her hair bless her :):rolleyes: I took over drying it and straightened it for her which we both enjoyed and she said looked lovely.
I spotted a few longer hairs and said I'd snip them and mum said Well I think it was our Andrea who cut it and she's not a hairdresser.:oops: I just said No, and mum said But she didn't do a bad job did she, everybody's liked it who's seen it. :)She went on to tell me she'd not seen our Andrea since she cut it which she's surprised at cos she was always with her. She looked a bit sad so I bobbed down in front of her and said I am our Andrea mum I'm here and grinned. Mum grinned back and said Oh sorry love I didn't notice and patted my arm. She'd forgot again a few minutes later though and I'm not sure who I've been today as she hasn't called me any name but has mentioned our Andrea a few times as if I'm not her but she's wasn't asking after me upset. I hope she continues in ok calmer mood while carer is there this afternoon ad tonight when she's on her own.🤞
 

Starting on a journey

Registered User
Jul 9, 2019
337
Could you try and do it together, sister writes it, reads to you, you advise any changes, she then types them in?
Remember your sister has not seen her mum for a little while because of the pandemic and may be a bit unsure on some of the questions because of this. It does not matter if you repeat yourselves, make grammar or spelling errors as long as you get your message across.
Good luck to both of you
 

DianeW

Registered User
Sep 10, 2013
683
Lytham St Annes
Yes you definitely need to answer the questions as it’s you that’s doing the caring, and you can show how much worse Mum is now.

I think 4 weeks respite is a brilliant idea, I’d forgotten they offered 4 weeks.
 

Sarasa

Registered User
Apr 13, 2018
1,504
I'd agree to doing the form as a collaboration between your sister and you. Maybe read through these posts and highlight some important point. The fact your mother doesn't recognise you, her confusion about where she lives, that she is never sure if your dad and her mum are still alive. Make sure to use phrases like duty of care, vulnerable adult etc etc. Also make sure that you keep a copy and a note of when yous sent it off so you can chase if need be.
Good luck with it all. I'd suggest doing it with a glass of wine in your hand, but maybe that isn't a good idea!
 

canary

Registered User
Feb 25, 2014
12,894
South coast
Dont forget to add that your mum often thinks that she can walk home. So far you have managed to prevent her from trying, but if you wernt there Im sure she would have been trying to walk to her "other" home
 

Starting on a journey

Registered User
Jul 9, 2019
337
@canary a brilliant point. If you weren’t so douper douper talking and calming mum down she would walk...you have stopped her walking out of your house before....I am sure you have said that or something really similar
 

annielou

Registered User
Sep 27, 2019
1,428
Yorkshire
Thanks for replies @Starting on a journey @DianeW @Sarasa @canary xxxx
Sis messaged me after she'd finished work and sent me photos of questions as she went along. First was just multiple choice questions about tasks and then there was a summary to direct you to things to read to help with things in multiple choice questions and then you could add additional information about why needed help before actually submitting form. Sis wrote in that part that she was filling it in on behalf of mum and we'd been seen by SW before but thought mums needs had changed significantly, that mum was no longer able to care for herself independently the majority of the time. She put mum needs prompting to clean and change clothes etc needs me to give her meals and medication. Main concern is mum is anxious about being on her own, doesn't always recognise me and so wants me to leave, thinks I'm lying and threatens to leave herself if I don't. That mum has carer 2 afternoons a week which mum took to originally but on last visit she wasn't able to console or distract mum and mum rang me twice about where her house and furniture was. That mum wants to go live with her mum or our dad who are no longer her and wants to leave house to find them on an evening. Fom late morning mum has no concept of her life and events and is confused, we understand this is to be expected but level of questions is hard to contain when she doesn't recognise me, thinks I'm lying and threatens to leave. We have adjusted door sensor times because she rings at night wanting to leave and go home. She ended it saying we feel mum requires care or someone with her constantly to ease her anxiety as she is scared to be on her own and phones in tears on a night. She put I was exhausted and couldn't commit to any increase in care as it was putting a strain on mine and hubbys health and relationship and I feel I might be adding to mums stress when she doesn't know who I am as she wants me to leave, or threatens to leave herself and gets aggressive. That I have had to leave her alone a few times cos of it and this has interfered with medication routine and led to fears mum may leave house to look for me. She finished it that we'd appreciate a new assessment of mums needs and opportunity to discuss options.
It was an odd feeling after sis submitted it, like we were going behind mums back trying to ask for something mum doesn't want and plotting against her even though we are trying to do what's best for mum because we love her and want things to be better for her.
It felt a bit odd that mum had a better day today while I was there and there were no calls while carer was there this afternoon yet we were filling form in anyway, I know it's not always a better day though, the last few haven't been better days.
I was hoping mum was going to have good day today without worry and upset but then my mobile while went at 7.03. Mum asked if I had a key to our house. She meant the house her and dad lived in that we had all lived in before they split us and yet again she thought they had only just split up and she'd only just moved to that house again. Tonight she kept saying she thought she'd only been there since christmas so only a few weeks. We were on the phone for 20 minutes, she wasn't crying today just very confused and sad sounding.
She didn't think her and dad had just split up and she'd lived there years, she didn't know I'd been to see her every day, or been today till I reminded her I'd done her hair this morning and she said Oh yes that was lovely I enjoyed that. She kept going round and round with questions where was W (my dad), was he dead, when did he die, it didn't feel like that long, had she been on her own all this time, how long had she lived here, so was that house empty. Why did she think it had only just happened? I said sometimes you get mixed up when your brain gets tired, you'll remember in the morning mum try not to worry about it now. Mum said Ok love.
Then she'd said she didn't see me and then she asked if I went to see her, she didn't remember, was I married, was it -, where did i live, oh i have that in my book, are you Andrea --, have I been to your house, have you been married long. Is our Andrea married, are you our Andrea, oh I thought you were my friend, who's my friend, do I have any friends, who do I go and see with her husband. Is my mum dead, was it a long time ago, is it oh, why can't I remember. Again I told her try not to worry tonight it will come back to you tomorrow you just get mixed up sometimes when you're brain gets tired. Ok I'll try.
Then mum asked is my mum dead, is it a long time ago I didn't think it was a long time ago, does our - and - (brothers) know. Is W dead too, when did he die, but I thought I'd been with him at Christmas, I thought he'd told me he wanted to be with C, is that not right, are you sure, I can't believe that, why does it feel like it was recent, I said its' just your brain mixing memories up mum. It remembers old things and misses out new things sometimes. Does our Andrea know, does our - (sis) know, how do you know, are you sure, did you see where he lived, was that in our house, did I not live with him, are you sure I'm sure I was living with him till Christmas.
She said I don't know what to do, I don't understand it I don't know what I'm doing. I told her again about mixing memories up and said try not to think it about it tonight mum cos the more you think about things the more mixed up they get. Mum said Do they? I said Yes when your brains tired like it is now it can't remember things properly and you just wear it out trying to think about it. I know it's hard but try not to worry mum. Say I'm not worrying tonight I'll work it out in morning I'm safe in my house now and our Andreas coming in morning, She said ok I'll try love and then said I'll go now then. We said night and love you lots and then she said But I don't see you.
I told her I went every day and mum said I haven't seen you today so we had another round of if I'd been, what we'd done, where I lived, who was I married to etc. She asked if she came to my house and then said she thought she went to her friends house not mine, where was friend again. I told her it was my house she just mixes us up with friend sometimes, then mum asked who I was and was I our Andrea, her Andrea, her daughter, she hadn't meant me she thought she was talking to friend. Mum said but I come to your house all the time. I said well you would cos your my mum and mums and daughters see each other a lot. Mum said Do we? I said yes I see you at your house and you come to mine, I see you a lot cos I love you lots. Mum said Oh I love you lots too but got tongue twisted and we had a little laugh about having wrong teeth in and tripping over words . Mum said have I seen you today and I said Yes I was there till carer came and I reminded her about doing her hair and when she remembered that I said I'm going to be hairdresser in my spare time but people can only have a straight one length bob. Mum said what even men? and I said Yep everybody, man, woman or child, will come out with same bob hairstyle it's my signature and we laughed.
Mum said after that Will I see you tomorrow and when I said yes she said Ok I'll see you then and we started to say bye, I hoped I'd cheered her up a bit and we could leave things with her remembering laughing.
But then she started again by asking if I knew where she lived, would I go to her or her come to me cos she didn't know where I lived. Then she asked where I lived, if she could come to my house sometime, had she been before, had I lived here long, had I been married long, was it to same man, he was nice, what was my surname, oh I've got that in my book but I thought that was my friend, are you my daughter, Oh ok. Oh I'm confused I don't know. So again I told her to try not worry about it tonight just relax and it will come back to her tomorrow and I'd see her tomorrow. This time mum said ok love and we said night and love you lots again and hung up.
Poor mum it's cruel that she can't remember things and then also can't remember what you tell her to comfort her and explain, she forgets what's happened but can't seem to forget to worry about things.
 

Sarasa

Registered User
Apr 13, 2018
1,504
Glad you got the form sorted, sounds like you've covered the major points, but so sad that your mum is stuck in this loop about your dad and her mum and not knowing who you are. I guess this is because she has gone back in time and can't work out that you are the age you are.
Hope you don't get any more calls tonight and that tomorrow is OK.
 

Just me

Registered User
Nov 17, 2013
276
First a 🤗
Its such a cruel disease for all involved @annielou.
Mums short term memory (and long term) is non existent but as you say she can remember what to worry about.
She may not remember what you say but hopefully she remembers feeling your love xx
 

DianeW

Registered User
Sep 10, 2013
683
Lytham St Annes
I am so pleased you have requested a social services assessment, you really need to be well prepared for when it happens, but we can help with that and you can use this thread for reminders.

You poor Mum it’s heartbreaking for her to be so tormented and confused, I can only imagine how very hard it is for her in her world, because she really can’t understand what’s happening to her.

Just a pointer to remember from what you said on the form......it’s not that you can’t commit to any increases in your care level really, you actually need the level of care decreasing rapidly. I think you need to be very very clear at the assessment otherwise they will expect and allow you to continue.

You won’t be saying that because you don’t want to care for your Mum, and don’t love her....that is blatantly obvious.....you need to be standing up and making sure that your Mum now gets the care that she needs to keep her as happy and safe as she can be.
 

canary

Registered User
Feb 25, 2014
12,894
South coast
I think you and your sis filled in that form well. I know it feels like you are going behind their back, especially when its a good (or at least, not really bad) day, but when I filled in forms for mum I was told to fill them in assuming its the worst day.
Just a pointer to remember from what you said on the form......it’s not that you can’t commit to any increases in your care level really, you actually need the level of care decreasing rapidly. I think you need to be very very clear at the assessment otherwise they will expect and allow you to continue.
Can I just second that.
 

imthedaughter

Registered User
Apr 3, 2019
362
Hope SS get back to you soon @annielou - so sad that your mum is so upset about her mum and your dad.
Loneliness really is a state of mind isn't it - my husband's nan has plenty of company, has been going out even though she shouldn't have, but still complains she feels lonely. My nan shielded for two months, and didn't see anyone bar my mum from halfway down the garden path when she delivered her shopping, and says she never feels lonely. I hope you are not far from getting the support you need.
 

Bikerbeth

Registered User
Feb 11, 2019
1,419
Bedford
Sending you some hugs too 🤗🤗🤗🤗🤗
Having just read your last week in one hit you definitely need some. It did strike me how much your Mum has deteriorated even within that 7 days. It struck me how stressed and how sad you are for your Mum when you are trying your best to keep her safe. As others have said you are amazing. I am pleased that you are requesting that further assessment and so hope that action is taken.
I think others on here have given you good advise and I know your Mum does not want to go into a home but you realise that a home is now the best place. I know the timing is not good with Covid and your Mum having to quarantine but your Mum is saying she is lonely and on her own now (even if that is not the reality) . My Mum’s home is taking in new residents and they are having to quarantine but they are permitting frequent window visits. I know it is often better not to visit initially to allow the resident to settle in but due to quarantine Mum’s home felt that in some cases the window visits were best during the 14 days. So when you get this far in the process it might be worth asking about.
Sending you more hugs 🤗
 

annielou

Registered User
Sep 27, 2019
1,428
Yorkshire
Thanks @Sarasa @Just me @DianeW @canary @imthedaughter @Bikerbeth xxxxxx
Good point, we will need to make it clear I can't carry on with level of care now giving as well as not being able to provide more. Not sure that they'll take much notice but we can but try for mums sake.
I'm also not sure how long it will be before we hear anything, sis said she will look back at some of the messages I've sent and make notes ready for when they ring her, she'll probably go cross eyed there's that many to look at bless her. I think things will take a while anyway and we still may not get very far but hopefully restrictions will continue to lift and things get better virus wise, rather than get worse which is a big worry.
Thanks for hugs and advice and support. xxxxx 🤗 😘
 

annielou

Registered User
Sep 27, 2019
1,428
Yorkshire
Just getting ready for bed house phone goes. Lifeline people mums door sensor just gone off. Mum said she was ok but had unlicked door so letting me know in case i want ring and check she’s ok. Called mum ok but lost her keys. I ask why opened door. Says again lost her keys cant find them. I said did you unlock door to open it. Yes. Then you must have your keys then mum. These are for my house they shouldn’t work here. I can’t find my ones for here. I tell mum those are keys describe keys on keying. Yes that’s what I’ve got but they for other house. You don’t have another house mum those keys are for that house. Mum growled at me in frustration. I said its 12 oclock mum you should be in bed and she said I know but I couldnt find other keys. I tell her she only has one house she is in it she only has one set of keys she has them. She lives there. She does have any more keys because she doesnt have another house.
Then I asked her if all her doors are locked she says thinks so. I told her to go try handle but dont open door cos will set sensor off. She tried it, it was locked had bolt on i told her try other one and if locked to then leave them She said was and she would so I asked if she was going to bed noe and she said she would. I hope so.